Murphy’s Law: Weeks 3 & 4 – Lines, bellies and other worries

By the 3rd Sunday in February, I was dreading them. It seemed things always got a bit worse on Sunday. But I was doing my best to make the best of things. Brian was feeling less tired, but had picked up my sore throat and his tonsils had just about filled his throat, making it hard to sleep. So Patrick and I had made it through church on our own for a second week in a row, and we’d gone to Sunday dinner with my family.

On the way home, I decided we all needed some better time out of the house, so I called Brian and asked if he wanted to go for a drive. We live in the only place in the world where you can drive to 4 LDS temples in an evening, and decided that we would. It had snowed that morning and there was still a light dusting that made the temples glow. Patrick loved it, cheering “Mo’ mo’, ‘ple ‘ple” (more temple) from the back seat.

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Snow is unnerving to a kid whose gait isn’t steady. Patrick was very proud to have taken these steps.

However, he also kept saying “scrub scrub”… which I thought was him just jabbering until we got home. I went to get him out of his seat and found his leg soaked in TPN. And when we got inside, I found that he’d bitten a small hole in his broviac line.

So, we hopped back in the car and to the hospital. They were able to repair the line, but with a caution that this was the last time they’d be able to fit a repair on only one lumen.

All seemed a little more back to normal. I was feeling better, except an ear ache, and Brian slowly was, too.

Monday was a peaceful day, mostly. Brian went back to work. I tried to catch up around the home. And that evening, we celebrated 3 years since having Patrick sealed to our family by visiting that temple one more time.

On Tuesday, I took Patrick for his first of what was supposed to be a series of free occupational therapy sessions at the community college. He’d been seen the week before and they were excited about all the students could learn from him.

We arrived a little late, partly because Patrick was not sleeping well anymore. (He kept waking up in the early morning thinking it was time to get up). So I’d let him nap long. And then there was an accident on the way.

But, they were ready for us.. we were only a few minutes late and I walked in to find – that the PT who wasn’t supposed to be available, was there in the session.

For the first half of the session, they watched him play. They tested his balance and his trunk strength and rotation and felt the muscles in his foot.

Then, they sent the students and Patrick off to work at a table, and they stopped to talk to me. Turns out, they’d discussed him earlier in the week and decided that his medical needs were greater than a student program could accomodate. They were especially worried about his nut allergy and about his g-tube being pulled out. They’d decided they couldn’t handle those emergencies. (And yes, I’m still baffled as to why they thought they would be the ones to handle them at all.) Anyway… in that one visit we went from a plan of free weekly OT and PT, to a promise to write a home plan for us and see him once or twice a year to update it, instead.

I was flabbergasted and didn’t know what to say. But on the heels of the rest of the month, I didn’t have enough fight in me to try to change their minds.

I had learned some things from the experience, regardless. Both of the professors/therapists agreed that what Patrick needs most right now is occupational therapy. They said they could see so many ways that a good occupational therapist could help him.. balance, attention, independence, and more could be helped.

And so, I came home and made an appointment with his rehab doctor to discuss how to start private OT, instead.

My ear got to bothering me and I finally saw a doctor, who prescribed me antibiotics and decongestants to get the fluid out of my ears. That is, after she looked in my throat and said she wouldn’t be surprised if I had a mild case of mono, too. Oh well, it was quick and easy and other than the drugs that made me jittery and stupid, made me feel better, too.

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In the middle of winter, we had a day like spring, so Patrick and I went to the schoolyard to play.

In the meantime, Patrick’s belly started to get very upset. The worst it’s been since his last surgery. He went from eating very well, to barely eating, and started to never make it through the night sleeping. His output went through the roof and he just wasn’t himself.

Finally, Saturday I called his GI on his cell phone and requested blood cultures and a couple of other tests. With those started, we gave Patrick some ibuprofen, which seemed to help, and tried to get him to rest.

He ran low-grade fevers on the next Sunday. I did, too, but I think for other reasons. And then, he started to get better. He’s been up and down since then. Obviously, the bacterial flora in his gut is out of balance, but we don’t know if there’s something more.

Sadly, Patrick’s tests were still negative for mono after 3 days. However, after 6 days, his doctor called to tell me that they’d been positive for a bacteria called bacillus. We fought bacillus for several months a couple years ago.. finally shook it and learned later that there had been some contaminated alcohol wipes. But it also grows in old restaurant rice. So there is a chance that Patrick picked up the bacteria from rice.. after all, it’s one of our favorite foods.

So we drew labs again. So far as I know, though, those were negative. It’s highly possible that the first positive was a false positive, an accidental contamination that happened in the lab. We just don’t know. I kept the suitcases packed for 2 weeks to go to the hospital. Finally unpacked them today.

In the meantime, I let myself get distracted one morning while Patrick was playing and didn’t notice he’d gotten his tubes caught around a kitchen chair. He wanted a toy and pulled, HARD. He broke the Y in his tubing, his safety pin, and…. his repaired line.

So, we spent the rest of that Monday at the hospital. They tried to repair the line, but it didn’t go smoothly. First, as we’d been warned, they couldn’t repair just one lumen. We had to shut off the TPN so they could cut both lumens. Then, once the repair was made, the line didn’t flush well.. the repair segment seemed off. And so, instead of going home as we usually would have done, we waited for the glue to dry.

Patrick now asks to wear a hairnet and masks like everyone else.

Patrick now asks to wear a hairnet and masks like everyone else.

Patrick now asks to wear a hairnet and masks like everyone else.

Patrick didn’t seem to mind this much. Tube free in the hospital and free to play? We shared a hot dog in the cafeteria. Then went up to the playroom to play. We stopped in the gift shop for a box of sticker books. Then he practiced climbing up and down the stairs for a while. And finally, we came back to the room for a nap.

But the line still didn’t work once the glue dried. So we waited through thre 30 minute rounds of TPA (declotting agent) with a nurse who was obviously not comfortable with central lines. (My favorite quote was, when she asked me if cleaning the line with alcohol wipes was ok while just brushing over the line with one. I said yes, but we scrub for 15 seconds. Hospital protocol. And she said, “Oh, you count?” At least she did it again the right way.)

Anyway – around 7, IV team came back and was brave enough to actually work the line until it flowed. And at 7:45 I threw a fit about it taking too long to discharge us. We got home to TPN by 8:30 (thanks to a motivated daddy).

The line still doesn’t work quite right. It doesn’t draw well. In fact, one side doesn’t draw at all, unless Patrick’s got one hand above his head. The home nurse said it’s “positional”, or in other words, that maybe he’s outgrowing it, pulling it farther back into the vein so it sticks to the vein wall when we draw, unless he changes it’s position by lifting his arm.

I’m still torn as to whether or not to keep trying to work with it or talk to the surgeon about replacing it while we still have the option of wiring over it.

So we ended the month much healthier and with working cars. We don’t have occupational therapy yet, but know a direction to go in at least. We have a line that we can give TPN though, even if only one side draws. Patrick’s belly is still not quite right, but I’ve switched draining methods at night again and belly aches aren’t waking him any more. His output isn’t perfect, but it’s trending downward. Things are returning to normal again.

It snowed in the valley Saturday night. The snow cleared all of the smog out of the air leaving this fresh and beautiful and new looking. To me, Murphy was also washed away with that storm. February is over and we are starting fresh with new direction and new opportunities this month. Already to me, after the lions of February, March feels like a lamb.

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